Racial disparities in hematopoietic cell transplantation in the United States

Abstract

Hematopoietic cell transplantation (HCT) is a highly specialized, expensive and resource-intense medical procedure that can be associated with racial disparities. We review the prevailing literature on racial disparities in HCT in the United States and describe areas for future research and interventions. We discuss the complexity of interpreting race as a biological and social determinant of disease in biomedical research, especially as it relates to HCT. In the United States, race is often a surrogate for socioeconomic, education and health insurance status. We also discuss some of the nuances to consider while reviewing the literature on racial disparities. Disparities by race exist in three areas related to HCT: donor availability, access to HCT and outcomes of HCT. African-Americans/Blacks have a lower likelihood of finding an unrelated donor. Race and ethnicity definitions are country-specific and reconciling race data can represent significant challenges to unrelated donor registries worldwide. African-Americans/Blacks do not have the same access to autologous and allogeneic HCT as Whites. Racial disparities in outcomes of HCT are more prevalent among allogeneic HCT than autologous HCT recipients. More research is required to understand the biological, social, cultural, medical and financial aspects of race that may influence access to HCT and survival after transplantation. Better understanding of racial disparities will minimize inequities, inform health policy, guide development of interventions targeted to eliminate disparities and ensure equitable access to HCT for all populations.

Patient-centered care coordination in hematopoietic cell transplantation

“…11 This is because socioeconomically disadvantaged patients, those without adequate social support, those with extensive comorbidities or a low level of health literacy, rural residents, and elderly patients are at high risk for poor care coordination after HCT and experience a high likelihood of poor outcomes. [12][13][14] Another vulnerable group in regard to care coordination is the pediatric and adolescent and young adult population, for whom special care needs, knowledge gaps, and a need for continued access to care during transition from pediatric to adult providers pose challenges.…”

Geographic access to hematopoietic cell transplantation services in the United States

“…7 For HCT, both the geographic and non-geographic components of access, as well as population and system-level factors, appear to have significant roles in both utilization and outcomes. Disparities in access to HCT services have been reported for minority and/or socially disadvantaged populations, 12,13 as well as difficulties in securing a suitable donor 14 and limited evidence of worse overall outcomes after HCT. 13 Furthermore, patient sociodemographic characteristics such as age, gender and insurance status have also been shown to influence utilization of HCT services.…”

“…Disparities in access to HCT services have been reported for minority and/or socially disadvantaged populations, 12,13 as well as difficulties in securing a suitable donor 14 and limited evidence of worse overall outcomes after HCT. 13 Furthermore, patient sociodemographic characteristics such as age, gender and insurance status have also been shown to influence utilization of HCT services. 5 Additional barriers to accessing HCT include variation in physicians' referral patterns, 15 the availability of a suitable transplant donor for allogeneic HCT, 16 and securing payment for treatment via insurance coverage pre-approval or patient prepayment.…”

The increase of the global donor inventory is of limited benefit to patients of non-Northwestern European descent

“…[30][31][32] Future complete, high-resolution HLA typing and provision of additional donor characteristics could theoretically minimize the length of a search to a single day, 33,34 and probably further reduce the rate of transplant cancellations due to relapsed malignancies. This, however, may not help non-NWE patients, since the limited number of registered, available and suitable non-NWE donors in the national and international registries [35][36][37][38] highlights the need for strategic recruitment of both UD and CBU, 39 and for methods to prevent untimely opt-out of donors, in particular those from ethnic minorities. 40 Targeted donor recruitment, with personal and written native speaker support, and through social media, is being increasingly practiced.…”